Living a long and happy life in spite of having ALS/Lou Gehrig's disease

#harrypotter

Words are powerful. We have to make sure we give power to the right words in our life. If you know anything about the Harry Potter book and movie series, you may know that there is a wizard who other witches and wizards are so fearful of, that they won’t even speak his name. Harry Potter is often scolded by his teachers for daring to utter the name, Voldemort. They fear the power held by the name when spoken aloud. Harry is always quick to point out that he isn’t afraid to say his name. Harry believes that by not saying the name Voldemort, they are giving Voldemort even more power.

I think Harry was spot on. Too many times have I felt the fear cast by the words, Amyotrophic Lateral Sclerosis (say that fast, ten times), or ALS. It is referred to as one of the worst diagnoses you can receive. One of the worst diseases you can have. Hearing ALS referred to in this way, over and over again gives the name a power over you that it should not have.

I, like Harry Potter, think that people give way too much power to the name of a disease. Think of Cancer, for instance. When you find out that someone you know has been diagnosed with it, upon hearing the word, Cancer, don’t you immediately get a sick feeling in your heart, or maybe the pit of your stomach? That is the power and the fear held by the word, Cancer. Power that would be much better off placed elsewhere. Power and energy you could be using to get over, or through, your illness. Don’t give your illness or disease any more power than it deserves. Don’t be afraid of the name and all that the name entails. You will be ahead to actually forget about whatever it is that you’re dealing with (as much as safety possible) , and just go on with your life as normally as you possibly can.

Any negative word can hold a type of power over us. These words can make us feel doomed, like we have no chance of success. If you believe you will fail at something before you even attempt it, chances are you will fail. But, if negative words can hold power, so can positive words. If you believe that you will achieve your goal, just believing it will go a long way in making it happen. Pay attention to the words and the stories that are running through your mind, often non-stop. Are they positive messages of health and happiness, or are you constantly worried about test results and thinking of the aches and pains you have? Maybe not just the stories in your mind, but the stories and the words you use to tell others about your life. When someone asks how you are, what is your first response? Do you tell them about how bad you feel, or about whatever bad thing just happened to you? Or, do you talk about the good things that recently happened in your life?

Is your glass half empty, or half full? Some days it may be hard enough just to find your glass, I know, been there, done that. But, try not spend too much time focusing on the negative. Try to give more power to the positives in your life. It really can make a huge difference. Make every story floating through your mind, one that you would be willing to put in your yearly Christmas newsletter. You know, those often funny and maybe annoying letters people like to add into their Christmas cards to let you know how great their lives and their families lives are going. You rarely read anything negative in those letters. Somehow the people in those letters never have anything bad happen in an entire year! So, go for it! Focus on the positive, and just skip over anything bad that happened. Give power to the positive words and stories of your life! Try to make every day a Christmas newsletter day!

Find something to look forward to, a reason to get out of bed in the morning. It can be literally anything. It can be easier to keep yourself going through the hard days if you have something to look forward to, something you want to do or see. Something you don’t want to miss out on.

For me, the biggest thing has been my kids. When a doctor told me I had only a few years left to be with my family, I said, no (in my mind). I didn’t want to miss out on seeing my kids grow up. I just kept planning and looking forward to our lives like usual, only more so.

But it’s not just the big things that keep you going, it’s the little things too. Like planning on taking a vacation. Or maybe something as small as a new coffee frappuccino coming out at Starbucks next month. Something to actively plan for and look forward to.

My daughter got me to read one of the Harry Potter books, and that instantly gave me another thing to look forward to. I couldn’t wait to read the next book in the series, and the next, and the next, until I had read them all. And then there were the films based on the books to see and to look forward to. My ALS just had to slow down because I wasn’t going anywhere until I had seen all of the Harry Potter movies! I saw them all. That’s when the Powers That Be/God, lead me to Shonda Rhimes. Also known as the creator of some of the best shows on TV, and you guessed it, another reason for me to hang in there for one more season of, “How To Get Away With Murder “, “Scandal “, and “Grey’s Anatomy”. I’m not gonna miss out on what happens with Merideth Grey because of ALS! Ok, I am not saying that all you have to do to keep going when dealing with a serious illness is to find something to look forward to …but, focusing on something besides your illness is a huge piece in the puzzle. I am looking forward to seeing Alice Cooper in concert this summer, I don’t want to miss that. And on and on it goes. I am just going to keep on keeping on, and finding new things, both big and small, to look forward to for as long as I possibly can.

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